This website is designed to educate, entertain, and even inspire. By sharing the events of my life and my daily struggle to live with ALS you will learn how I do it, see the fun and interesting things someone in a wheelchair and on life support can do, and maybe you’ll find a way to try or do something you’ve never thought possible.

ALS is a horrible disease. It robs its victims of all of their voluntary muscles including the diaphragm which causes those afflicted to suffocate and die. I have lost the ability to use my arms or legs. I can’t speak, or chew food or swallow. I cannot breathe. I get my food through a tube and my air from a machine. I move around with a wheelchair and I communicate through a computer. I also love every minute I’m alive!

With the help of a loving wife and family and generous support from friends I’m able to do many of the things they can do. I go to the beach, theatre, and restaurants. I read and write and follow my favorite teams. I entertain friends, and relax by the pool with the sun on my face. I enjoy the smell of fresh oranges, the feel of the wind whipping across the water, and seeing the sky turn pink every night at sunset. I laugh at good jokes, cry during sad movies, and wonder about whom our next president will be. I spend more time fishing than I ever did golfing. I constantly think of ways to do things and ways to do them better. I’m one of the fortunate few who live with ALS, and I’ve chosen to make the most of it.

Making the most of it includes raising money to find a cure or treatment for this insidious disease. Since creating The Matt White CureALS Foundation dozens of fundraisers and generous donors have contributed hundreds of thousands of charity dollars to this cause. I take the responsibility of distributing this money very seriously. Only the most progressive, active, successful, and promising researchers get disbursements from The Foundation. 100% of the money donated to The Matt White CureALS Foundation goes to ALS research. All administrative, fundraising, and operating costs are paid by The Foundations Board of Directors, so your tax deductible donation will be used for the purpose you intended. There is little that I do that gives me greater satisfaction than raising money for The Foundation. Feel free to use this website to make a tax deductible donation to finding a cure for ALS.Please enjoy the website, and thanks again for visiting.

Hello, Matt!! Great website…it is educational for sure. Keep up the extra effort. Hope to get down with Rick this spring to hang out and do a little (or alot) of fishing!! Thanks, for the 2007 Superbowl Pick ‘em. I was able to get some co-workers involved as well. Take care, Go COLTS!!!!!!!!!!!!!

my brother 37 yrs old was just diagnosed with als. i just wondered if you tried any of the natural healing remedies, clay baths, detox, etc… if you did, did they help you any or is my brother throwing away money he doesnt have?

Matt, you are a true inspiration! I lossed a friend to the same thing you are suffering from years ago and I will never forget him. You give people hope and courage. God bless you! I admire you more than words can say.

Hi there Matt.
My Husband Bryan died of this terrible disease at the age of 44 in 2002. He too had chosen to live with the disease instead of die from it. And….he did live with it for 10 yrs, diagnosed when he was 34, he had a zest for life and a great love for his friends and family.

I am happy that you are able to live comfortably with this Awful disease and am sure that your wife has to be an amazing person. I know you must think about others that have this disease and are not as financially secure as you are. These people that do not have a support system are those that sadly are not able to “live” with the disease, and are forced to die from it. Thank you for all that you are doing to help. May God bless you and yours and know that I will be praying for you .
Billie

My father, Al, died from ALS almost 7 years ago. He was 79 years old. Since then I have been connected with the ALS Recovery Foundation in Miami, Florida. We have a Run/Walk every year during Mother’s Day weekend and raise a decent-sized amount of money to help end this disease. Hang in there and good luck. Life can be wonderful no matter what.

You guys have a powerful site here. I got here because of the excellent video for the head restraint. The question on appropriate head restraints is raised consistently on the Yahoo Living with ALS group, and the reference to your site and video is one of the most useful I have seen.
I am also on the same journey and doing my little part to raise awareness and advocate for us PALS. Sites like yours do much to carry our message. Thanks.

Matt& Shatrina,
Your interview on WBCL was awesome! I’m sure that the message that went out over the radio waves will serve to be a huge blessing and encouragement to many, many people. Thank you for taking the time and making the effort to share your lives with all of the lives that you have touched and effected this day.
Much love to both of you, Gwen

We had a wonderful stay in FL this past week, and I can’t tell you enough how incredible it was to meet both you and Shartrina. Thank you for welcoming us into your home and allowing us to be there during your interview with WBCL. After the interview, you both just continued on about your day and Shartrina brought you outside in the sun. How remarkable it was to see love so clear. The strength and kindness of your family brought us overwhelming joy. More than ever did we see that each day is what we make of it.

Your courage is an inspiration! I came to your web site via Steve Rickel. I am proud of him for his recent accomplishment of completeing the Philadelphia Marathon. I now know where much of his motivation and strength was derived. I hope your happiness continues for many years!

Hey Matt and Shartrina! We’re moving to the States in April! Expect to hear from us soon. Anyway, I’m doing my medical project on ALS.
Bye!
PS: Shartrina, next time we come, I’m bringing Back to the Future! :-)

Hello Matt & Shartrina , I had found this site via of your aunt Phyllis , now you may have figures out by may name I am your 2nd cousin of which we haven’t see each other for probably 35 years or more. I am very sorry that you’ve had to endure this disease, but I have heard you have been a fighter & have found that special person , “YOUR WIFE” to assist you in helping with your needs . You have proven that there are some tough cookies in this family , & we will always pray for your needs to be met & that includes a cure.
With Love from Michigan
Mitch, Kelly, Ashley, Megan, Aryn, Andrew,
& from Indiana Adam & Julie ,
see there is alot of “we’s” to help

Matt–You are truly an inspiration. Not sure if you remember me, but I was your White Sox contact oh so many years ago. I am thrilled to hear how well you are doing and so happy that you have a wonderful wife by your side. Wishing you all the best…
Amy

By far the most concise and up to date information I found on this topic. Sure glad that I navigated to your page by accident. I’ll be subscribing to your feed so that I can get the latest updates. Appreciate all the information here

A friend shared your New Years letter with me. You are both truly amazing! You are filled with tremendous courage & faith!! It’s great you are getting the word out about this terrible disease. BUT the best is that you both seem to be truly LIVING! Not many of us can actually say that! May God bless you & protect you both!

Matt…your photo and heart touching story in the Sarasota Herald was truly inspirational. Thanks for the lesson in living. Everyone should meet you and read your story. God Bless you and your devoted wife.

Matt- I am praying for a safe trip for you and that you inspire each and every one of our Bulldog players to do their absolute best on Saturday… win or lose! I wish that I could be at the game to see you again! xoxoxox. Heather

Matt, you and your wife are remarkable people; I just read in the Herald Tribune your story and want you to know how it touched me! There are things in life that sometimes you feel are tough to overcome, but after reading your story, it truly lifts you up to realize that through perserverance and determination, all things are possible. God Bless you and your family and one last thing! GO BUTLER, we will be watching.

Matt,
From time to time my parents, Marvin and Vera have kept me updated about the challenges you are facing. It has been years since we have chatted or had a family get together, but your outlook on life has always inspired me. I just heard about your journey back to Indy to watch the “Bulldogs” play in the Final 4. “Go Butler!” What an inspiration you are to those around you. Know that your cousin and his family are praying for you as well as for Shartrina as you face each new day. May God provide for both of you. Jehovah Jireh – our provider.

HELLO MATT AND SHARTRINA
WHAT A WONDERFUL INSPIRATION YOU ARE. ONCE YOUR GREAT JOURNEY TO INDY IS OVER I WOULD LIKE TO MEET YOU. MY HUSBAND AND I HAD THE WORST NIGHT SINCE I WAS DIAGNOSED 2 1/2 YEARS AGO. I STUMBLED ON YOUR WEBSITE THIS MORNING AND I COULD NOT HELP BUT PULL MYSELF TOGETHER. I CAN STILL TALK, EAT, BREATHE

My mother was diagnosed with ALS March of 2008 and 15 short months later we lost her to this horrible disease. I was just watching ESPN and saw the segment on Butler and the speech you wrote for the team. I was very touched by your story and think you are an amazing inspiration for not only the Butler basketball team but also everyone who has not only been effected by this diesase but all those people who might one day cross the horrible path of ALS. Keep up the good work and lets find a cure!!

Hi Matt – (I’m Kevin’s mom) and I am so happy for you and proud of you. What an inspiring story. To take each blessing as it comes (and Shartrina is at the top of the blessing list) and live life to the fullest is often difficult for anyone without an illness – you are an amazing example of positive intentions and I send all my love and prayers to both of you – Go Dawgs!!!!!

matt,
starting my third year with als, and living life to the fullest. using eye gaze to communicate. Didn’t know a thing about computers until a month ago,
i am amazed at how i look at life now. every one should have to experience this for one week, the world would be a better place.
God bless and let us pray for a miracle cure
joe from ohio

Hey Matt, it’s Jesse Jorgensen, Russ’ son. He told me about this great opportunity you had to go to Butler’s Final Four game. Congrats man! What an honor and great experience that must have been. Good luck to your Bulldogs tonight. I think everyone in the country who is not a Duke fan is going to be cheering on Butler!!! Glad to hear you are doing well.

Matt/Shartrina,
My friend Stuart Bridges is a pALS here in Phoenix. Has had ALS for almost 12 years. He played tennis at Manchester College, graduated 1981. Would like to have you hook up with him by email if possible.
Go Butler!

I lost my dad to ALS in 2003. He battled this disease throughout my childhood with such courage and bravery, as I see in you. While watching the Final Four, I was touched by your speech to Butler and your story. Thank you for all that you do for ALS research! You are an inspiration! I pray every day for a cure. God bless you :)

I’m a friend of Matt’s parents and am so glad to see this website! Was disappointed I couldn’t access the Indianapolis Business Journal article or the Butler speech for some reason. Perhaps it’s because I’m viewing from AOL…will try otherwise. Keep up the great work!

Greetings from Colorado! I’m bored to death at work so I decided to check out your website on my iphone during lunch break. I really like the information you provide here and can’t wait
to take a look when I get home. I’m surprised at how quick your blog loaded on my cell phone .. I’m not even using WIFI, just 3G .
. Anyhow, awesome site!

Good day! I know this is kinda off topic but I was wondering if you knew where I could
locate a captcha plugin for my comment form? I’m using the same blog platform as yours and I’m having difficulty finding one?
Thanks a lot!

I comment each time I appreciate a article on a website or if I have something to contribute to the conversation.
Usually it’s triggered by the sincerness communicated in the article I read. And on this post CureALS.org | Personal reflections and fundraising for research. I was excited enough to post a thought :-P I do have some questions for you if it’s okay.

Could it be only me or do some of the responses come across like left by
brain dead folks? :-P And, if you are writing at additional
online sites, I’d like to follow you. Could you make a list every one of all your public sites like your Facebook page, twitter feed, or linkedin profile?

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